Perceived Appreciation for Care Associates with Higher Quality Caregiving Day-to-Day

Abstract Family members are critical to dementia care and the U.S. long-term services system. Yet, little is known about how to support the quality of care provided by family members, who often receive little training. We hypothesize that on days when caregivers feel more appreciated, they report providing a higher quality of care. To test this hypothesis, we asked spousal dementia caregivers (N=21) to complete 14 daily surveys that asked about their daily caregiving experiences. Our measure for “quality of care” was based on the Exemplary Caregiving Scale, and included 3-items pertaining to provision of care (e.g., “You considered your spouse's wishes and opinions when providing assistance”). Response options included “Most of the time,” “Some of the time,” and “Never”; scores were summed (range 0 to 6). Caregivers were also asked to what extent their spouse appreciated the care provided (“Not at all,” “Some,” or “A lot”). We applied multi-level mixed models to the data, and controlled for age, gender, Hispanic ethnicity, number of behavioral symptoms of dementia each day and months since diagnosis. In adjusted models, we found that on days when caregivers believed care recipients appreciated care provided “Some” or “A lot,” they reported providing higher quality care (B=0.52, p=0.010 and B=0.79, p<0.001, respectively) compared with days when caregivers believed care recipients appreciated care provided “Not at all”. Preliminary results may inform programs to support caregivers’ ability to provide high quality care (e.g., by helping caregivers to perceive rewards) and to identify caregivers at risk of providing low-quality care.

. However, very little research investigates how the caregiving experience may impact an individual's subjective aging experience. Various aspects of subjective aging have been implicated in health outcomes and memory function (Brothers et al., 2017;Stephan, Sutin, Caudroit, & Terracciano, 2016). The purpose of this study was to investigate the differences in perceptions of subjective aging between caregivers and non-caregivers. Participants (N = 185) completed a survey assessing several aspects of subjective aging, including subjective age, or how old an individual feels, memory function, well-being, attitudes towards aging, and aging stereotypes. A series of independent t-tests indicated that there were significant differences between groups on subjective age (p = .013), and subjective memory function (p = .013). Caregivers (n = 93) reported feeling significantly older than their chronological age, reported significantly more subjective memory complaints, and also reported poorer subjective memory function when compared to the non-caregiver (n = 92) control group. Previous literature does suggest that older subjective age ratings are associated with poor subjective memory function, so these results are not necessarily surprising. However, these results suggest that caregiving for individuals with ADRD may negatively impact caregivers' perceptions of their own aging experience, but not necessarily their perceptions about aging in general.

FAMILY CAREGIVING SUBTYPES IN THE CAREGIVING TRANSITIONS STUDY: A LATENT CLASS ANALYSIS
John Bentley, 1 Carly Lupton-Smith, 2 and David Roth, 3 , 1. University of Mississippi,University of Mississippi,Mississippi,United States,2. Johns Hopkins University,Johns Hopkins University,Maryland,United States,3. Johns Hopkins University,Baltimore,Maryland,United States Family caregiving requires activities and experiences that have negative and positive features, producing stress but also providing benefits. The Caregiving Transitions Study (CTS) enrolled 283 caregivers from a national epidemiologic study, of which 32 were caregivers prior to enrollment in the parent study, and 251 became caregivers while participating in the parent study. Telephone interviewers were conducted after caregivers provided care for a minimum of 1.6 years (mean=7.7 years). Latent class analysis (LCA) was used to detect unobserved groups of caregivers. Number of problems (i.e., ADL, IADL, communication, emotional, disruptive behavior), average burden per problem, depressive symptoms, perceived stress, purpose in life, positive aspects of caregiving, hours of care, and duration providing care were used as indicators. Classes were subsequently compared on several external variables, including demographics, quality of life, leisure activities, and caregiving strain. The best-fitting model consisted of three classes (4.6% long-term, 27.6% high-distress, and 67.8% moderate-distress). Classes were similar with respect to sex, age, race, and primary caregiving status of the caregiver. Long-term caregivers had much longer caregiving durations and commonly provided care to a child. The high-distress class was noteworthy in terms of greater number of experienced patient problems; greater likelihood of caring for a person with dementia; higher levels of caregiving strain, depressive symptoms, perceived stress, and perceived burden; and lower levels of quality of life, purpose in life, positive aspects of caregiving, and leisure activities. These findings suggest that caregivers can be classified into distinct subtypes, with one subtype characterized as experiencing high distress. There has been a rapid growth of Latinos age 65 and older in the United States and the population is projected to grow to 21.5 million by 2060. Latinos with Alzheimer's disease is expected to increase 832% by 2060. Caregiving for adults with Alzheimer's Disease and Related Dementias (ADRD) is physically, emotionally, and financially demanding, and has significant implications for caregivers' health, personal and social life, and overall well-being. This study aimed to describe the perceived experiences of middle-aged and older Latino who were primary caregivers of relatives with ADRD. We conducted semi-structured interviews with Latino caregivers to examine their perceived experiences of providing care for a relative with ADRD. Interviews were conducted in English and Spanish and were transcribed, translated into English when needed, and coded. We conducted direct content analysis. Participants were aged 50 to 75 years (n = 16), the majority were female (n = 12), and majority were caring for either their parent or spouse. We identified six reoccurring themes in the Latino caregiving experiences: (1) caregiver burden; (2) dealing with care recipient; (3) coping strategies; (4) social support; (5) cultural values; and (6) knowledge about services. The identified themes showed that Latino caregivers need support from their family and friends for caregiving. Latino family's structure plays an important role in caregiving experience. These themes are important to consider in future interventions that aim to reduce caregiver burden in Latinos as they influence the overall well-being of the caregiver.

OLDER LATINOS' PERCEPTIONS OF THE CAREGIVING EXPERIENCE
Exemplary Caregiving Scale, and included 3-items pertaining to provision of care (e.g., "You considered your spouse's wishes and opinions when providing assistance"). Response options included "Most of the time," "Some of the time," and "Never"; scores were summed (range 0 to 6). Caregivers were also asked to what extent their spouse appreciated the care provided ("Not at all," "Some," or "A lot"). We applied multi-level mixed models to the data, and controlled for age, gender, Hispanic ethnicity, number of behavioral symptoms of dementia each day and months since diagnosis. In adjusted models, we found that on days when caregivers believed care recipients appreciated care provided "Some" or "A lot," they reported providing higher quality care (B=0.52, p=0.010 and B=0.79, p<0.001, respectively) compared with days when caregivers believed care recipients appreciated care provided "Not at all". Preliminary results may inform programs to support caregivers' ability to provide high quality care (e.g., by helping caregivers to perceive rewards) and to identify caregivers at risk of providing low-quality care.  Iowa,Iowa City,Iowa,United States,4. Weill Cornell Medical College,London,England,United Kingdom Clinical trials for dementia caregivers have suffered from small sample sizes that lack adequate power to detect treatment benefits. Addressing these methodological shortcomings is contingent upon successful recruitment and enrollment of caregiver participants, but major barriers impede their participation in research. This presentation describes the lessons learned from recruiting and enrolling dementia caregivers into a pilot randomized controlled trial designed to help caregivers recognize and communicate about pain in dementia care recipients. Using Bronfenbrenner's ecological model, we organize our discussion of challenges and opportunities into three levels: community (ecosystem), institution (microsystem), and individual. A key challenge at the community level was gatekeeping by organization leaders, including those from support groups, senior centers, and congregate living facilities. At the institutional-level, challenges included an absence of administrative mechanisms for identifying caregivers and a lack of caregiver research expertise on the Institutional Review Board. At the individual-level, challenges included time constraints and varying motivations for participating in research. Strategies for overcoming these challenges spanned the three levels and included establishing trust and rapport with various constituencies; adapting our recruitment approaches to meet the specific motivations of prospective participants; and refining recruitment scripts to allow for greater personalization. Employing these strategies, which can be generalized to recruit other hard-to-reach populations, helped to overcome recruitment challenges and expedite enrollment of caregivers from a diverse range of sociodemographic backgrounds. Further improvement will require coordinated changes at the institutional and community levels, including the development of central research registries and administrative mechanisms for identifying caregivers.

ROLE-REVERSALS IN CAREGIVING: CASE STUDIES OF TWO WOMEN LIVING WITH LATE STAGE CANCER
Candice Reel, 1 J. Hunter Williams, 1 Emma Brennan, 1 Jonna Williams, 1 Kristen Payne, 2 and Rebecca Allen, 2 , 1. The University of Alabama,Tuscaloosa,Alabama,United States,2. University of Alabama,Tuscaloosa,Alabama,United States Many studies have examined the effects of caregiving burden and many others have focused on the effects of having a caregiver (Haynes-Lewis et al., 2018;Trevino, Prigerson, & Maciejewski, 2018;Semere et al., 2020). However, there is little data on the experience of role reversal, once responsible for caring for others and now being cared for while living with cancer. This project aims to identify ways in which women living with cancer cope with the internal struggles of receiving care. The current project is a case study of two females, one age 67, NHW, with a breast cancer diagnosis and one age 60, Black, with an ovarian cancer diagnosis, who once were caregivers and are now being cared for by family. Two semi-structured interviews were conducted that were approximately 60 minutes each. The study data are from a larger project focused on the self-perception of older women with late-stage cancer. Four independent researchers used thematic analysis to uncover common themes of coping between the two women receiving care. The themes uncovered were acceptance of the loss of autonomy, positive death attitudes, good relationships with their caregivers, and religiosity were identified and coded as coping strategies. The qualitative data showed that the use of these coping strategies helped the women be more accepting to care with less internal conflict. Future research should focus on generalizing these findings on a larger sample and use the data to help cancer patients better accept care from others.

THE LIFE SATISFACTION OF INFORMAL CAREGIVERS IN EUROPE: REGIME TYPE, INTERSECTIONALITY, AND STRESS PROCESS FACTORS Sean Browning, University of Victoria, Victoria, British Columbia, Canada
This research assessed the role of welfare state/family care regimes, intersecting social locations and stress process factors in influencing the life satisfaction of informal caregivers of care recipients with age-related needs or disabilities within a European international context. Empirical analyses were conducted with a sample of informal caregivers residing in Denmark, Sweden, France, Germany, Italy, Greece and the United Kingdom (n=6,007). Ordinary least squares and ordered logit regression models revealed that welfare state/ family care regime, intersecting social locations, and stress process factors were independently associated with the life satisfaction of informal caregivers. Furthermore, there was some evidence to suggest that social location and stress process factors intervened in some of the relationships between regime type and life satisfaction. There was also some evidence that stress process factors intervened in the